Frequently Asked Questions About Genetic Testing and Cancer

Joy Larsen Haidle, MS, LGC

Genetic testing for cancer has gotten a lot of media attention over the past few years, in part thanks to celebrities like Angelina Jolie and the Kardashians, who have publicly shared their experiences. If hearing about the genetic testing process has gotten you interested in the topic, it’s important to remember that a genetic counselor should be involved.

As a genetic counselor working in cancer genetics for the past 21 years, the following are common questions I hear from patients about genetic counseling and genetic testing for cancer.

Why should I see a genetic counselor to discuss cancer?

Meeting with a genetic counselor can be valuable to address your concerns about conditions that may run in your family. A genetic counselor will review the characteristics of your family history and discuss the chances that an inherited risk factor is contributing to the cancers in your family. Working together, patients, healthcare providers and genetic counselors can identify families who may benefit from genetic counseling. Genetic counseling will allow these families to learn more about their chances of developing cancer and how the information gathered can be used to tailor medical care.

I already had cancer, why should I see a genetic counselor?

When someone has been diagnosed with cancer, there are likely various factors that contributed to the growth of the cancer cells. In some cases, this might include environmental exposures and/or lifestyle factors. In other cases, an inherited component may have contributed to the cancer, especially if the cancer was diagnosed at a young age or it was an unusual tumor. Meeting with a genetic counselor may be beneficial to determine the odds of an inherited risk factor. This information can be useful to protect your health and determine if there is an increased chance of developing a second cancer or if increased cancer surveillance is necessary. If the chance of a second cancer is increased, risk reduction options may be available too.

Why should I consider genetic testing if I’ve already been treated for cancer?

Genetic testing can still be useful even if you’ve already been treated for cancer. It’s especially useful for women who had been diagnosed with ovarian cancer, because chemotherapy options may be expanded if there is a recurrence. Genetic testing may help to personalize a treatment and surveillance plan. Additionally, your genetic test results may be useful to your relatives, as it may provide information about their cancer risks and what type of cancer screening plan is right for them.

What's the point? My doctor can order a genetic test for me.

About 10 new genetic tests come to the market each day. Unless a provider is specializing in genetics or making concerted efforts to stay current, it is easy to fall behind on the available technology and testing options. Meeting with a genetic counselor prior to testing is useful to ensure that the best test is selected for your situation and that you understand what the test can and cannot tell you.

Meeting with a genetic counselor to discuss the results in detail is also useful to ensure that you understand how to benefit from the information. Once the results are available, genetic counselors work with your doctor to tailor your care plan.

Unless a provider is specializing in genetics or making concerted efforts to stay current, it is easy to fall behind on the available technology and testing options. Meeting with a genetic counselor prior to testing is useful to ensure that the best test is selected for your situation and that you understand what the test can and cannot tell you.

How do I prepare for the appointment?

Since a genetic counselor will review your personal medical history and family history, it is useful to bring a list of your health concerns and details about any cancer diagnosis you or a relative might have had. A list of surgeries and information about past colonoscopies are also important. It is important to talk to your relatives about their health problems and the ages when they were diagnosed. Ask female relatives if they had their ovaries and/or uterus removed (a hysterectomy), the approximate age and reason. While colon polyps are often not a common conversation topic, it is useful to ask if anyone had colon polyps, the number of polyps, their age at the time they were found and the type of polyps. They may need to ask their gastroenterologist for these details.

Nowadays, genetic testing is common enough that it is worthwhile to ask if anyone in the family has had it done and is willing to share their results. Completing a risk assessment is like putting together a puzzle. The more information available, the clearer the picture becomes. If you are adopted or have limited information about your family, it is fine. The genetic counselor can still address your questions and determine if genetic testing would provide useful information and the potential limitations.

Will insurance cover it?

Genetic counseling is typically covered by medical insurance. However, it is important to check with your insurance company to find out about your specific coverage.

Can I see a genetic counselor quickly if I have surgery pending?

If you are newly diagnosed with cancer and your surgical decisions are based on the results of a genetic test, many genetic counselors have the ability to provide a consult within a short period of time to ensure you have access to this information as quickly as possible for your pending medical decisions.

How do I find a genetic counselor?

NSGC offers a free tool to help you locate a genetic counselor near you. Many genetic counselors visit with patients in a healthcare clinic just like a typical doctor visit, but others can visit with patients over the telephone or via Skype. You can find these genetic counselors on FindaGeneticCounselor.org by selecting the telephone option.

Joy Larsen Haidle, MS, LGC, is immediate past-president of the National Society of Genetic Counselors and a genetic counselor at Humphrey Cancer Center in Robbinsdale, Minn.

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